I spent almost an hour this evening with someone whose family Hospice told is in his last twelve to twenty-four hours of life. Before retiring last summer, my career had been to serve as what in my religious tradition is a called a pastor. What I have to say in this post is not only for those who happen to have a spirituality like mine, or any spirituality for that matter.

First, I have a belief system that is secure and unwavering. There are tools at my disposal when spending time especially with the dying, tools that offer profound hope in the face of death. I make no apology for having such a belief system. I do not ask the readers of this blog to share that belief system or any belief system. It is my hope that my reflections on death have implications for all of us as we finally have to face the inevitable. We cannot make it go away. As helpful as denial is in the day to day celebration of life in the face of chronic illness, death must be faced for there to be any real joy in life. Otherwise we are left with a spectre hanging over us that steals the joy from our days.

Doc and I talked about how hard it is to leave behind people who are loved deeply. Who will take care of them? When the time comes, both those giving the care and those receiving the care have to come to terms with the separation that comes with death.

Let’s not tiptoe around this one. I have heard the plight of folks much farther into the unbearable pain of caring for someone who no longer recognizes them, someone who can do nothing for him/herself, who cannot converse, who is for all intents and purposes gone with only a shell of their former self left. I have felt their frustration as they talked about struggling to love what is left of someone they loved deeply before the Dementia took its toll.

How can they not long for death to come and release their Loved One from their helplessness? How can they not long for death to release them to live again if they see death to be transitional rather than terminal. This one is hard for me to talk about since Mary Ann and I are still far from that point. In fact, I am anxious to write a post on Caregivers’ Romance, which by the way will be rated PG 45. It is rated that way to warn our children and their spouses who may put what I write in the category once named by our Daughter-in-Law, “too much information.”

For tonight, it is death that is on my mind. Is death friend or foe? While my theology has clear language addressing that matter, the experience of folks with whom I have interacted over the years is not simply theological. It is experiential. When death comes in a sudden, tragic way, when the victim is young, death is the enemy. When someone has lived fully for many decades, when someone has fought a terribly debilitating disease, death may very well be a welcomed friend.

The truth is, of course, that death just is. However we define it or describe how we feel about a particular death, it just is. We have no say about whether or not it will come. It will come. How it comes, when it comes is worthy thoughtful reflection and discussion. Whether or not any one of us will die is not up for discussion. We will.

My goal with Doc was to help him find his way to peace. The way to peace is to finally decide to let go. Both Caregivers and Carereceivers have similar problems. Neither wants to let the other go. Each thinks that by hanging on to the other, they can change the inevitable. Each thinks they can keep the other for them to love. They can keep the love alive, just not the body.

Until we come to terms with death, we cannot live meaningfully — sadness is unbearable, and joy is shallow and fleeting. We experience little deaths every time there is a separation. There are tearful goodbye’s at the doors of preschool classrooms and college dorms and weddings. I remember my Mother commenting that when we returned home for a visit as an adult family, when we left, she had to get in the car, go out and do something. It was hard to say goodbye even then.

We don’t want to let go. If we don’t, however, if we don’t let go of that little one trying to learn to walk, that little one will never learn to walk. If we love our child, we have to let go. Otherwise it is not love, it is ownership, possession. It is about us, not the child.

Yes, to let go at the time of death is an act of love. It is an act of love for a Caregiver to finally say, “I love you, I will miss having you here, but it is okay for you to leave. I will be okay.” It is an act of love, a final beautiful gift to the Caregiver and those who want so badly to keep the one they love, it is a gift to say to them, I love you, I will miss you, but it is okay for me to leave leave you now. You are free to live.

For the dying whose capacity to communicate has long since gone, the words of love may not be there, but the person who lived in that body before the Dementia took him/her still leaves behind love from better times. The care you have given, maybe long after romantic feelings have been snuffed out, carries within it, love from former times. Death can free memories of better times to surface and overshadow the struggles and the pain and the hopelessness.

Death by its very existence gives life its sweetness. In his dying, Doc is touching his family in a way that has folded into it an intimacy that can be found nowhere else. I have had the privilege of experiencing a moment of that deeply moving intimacy.

Is death friend or foe? Sometimes it can be a merciless foe. Tonight, as it approaches, it is a wise and thoughtful friend – a gift ready to be opened.

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3 Responses to “Caregivers: What about Death?”

Just an added note. As it turns out, about the time I was writing this post last night, Doc headed on his way. He died at about 1:30am Central Standard Time. He finally let go. It is not always so, but this time death has brought with it peace for those who love him.

The day you wrote this was the day before I buried my mother. She had suffered from Parkinson’s for 8 years and from dementia for at least three years. Your comments were a comfort and expressed the many things I had been feeling over the past years. My father was my Mom’s primary caregiver but we had moved them to live near my family 7 years ago so that I could help when needed.
I felt angry for a long time. When they moved, I was excited that she would be able to spend time with my children. And she was able for a short while. But as Parkinson’s began to take over, and the dementia developed, she was very reluctant to go out of the house at all.She and Dad missed so much of the things I had been wanting them to be a part of- music recitals, concerts, volleyball and basketball games. Sounds pretty selfish to be angry when I knew how much she suffered….
The dementia progressed from paranoia and short-term memory loss to her becoming completely immobile and not recognizing anything or anyone. Due to other complications, she was in and out of the hospital and eventually had to be admitted into a full-time care facility just before Christmas, 2008. Dad was sure she’d come home again but she continued to decline.

The pastor at her funeral said something that I can’t forget… that we had been mourning her loss for 7 years, a little bit at a time as we lost more and more of her. That’s true.
The greatest comfort I found was visiting with her old neighbors, co-workers, and high school classmates that only remembered her former self. They didn’t see her in the final years like Dad and I. We’d forgotten how great she was- strong, independent, confident and beautiful.It was great to have the reminder. While I mourned losing her, I could finally rejoice in the woman she was and the impact she made on my life.God blessed me with a great mother and I will forever miss her.

Your Pastor is very perceptive. You clearly understand how painful it is to lose someone a little at at time over a number of years. Someone recently reminded me how much she wished she had had a chance to care for her spouse rather than losing him suddenly one day without warning, as she did. I cherish the time Mary Ann and I have together. I get angry and frustrated and sometimes within moments celebrate that I have the honor of caring for her. Over the years I have heard many who have lost loved ones say that as time has gone by the painful memories have diminished and the wonderful memories crystalized. What a wonderful experience you had listening to those who remembered your Mother at her best. You get to keep those memories forever. Thanks for your comment.